ALD Community Calendar

Community Call: Symptomatic Women

Please join us for a community call on Monday, July 26th at 7 PM EDT for symptomatic women facilitated by Kathleen O'Sullivan-Fortin and Janis Sherwood. Please reach out to [email protected] if you have any questions. Please use the following link to register: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07eiakponj233f6c9e ***Please do not register for this event unless you are a patient…

Details

Date:
July 26
Time:
7:00 pm - 8:00 pm
View Event Website

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
View Organizer Website

Community Call: Newborn Screening, Young Families, Parents of Asymptomatic Children

Please join us for a community call facilitated by Suzanne Flynn and Kathleen O’Sullivan Fortin on Wednesday, July 28th at 7:30 PM EDT (UTC-4 Time) for Newborn Screening, Young Families, and Parents of Asymptomatic Children. Please reach out to [email protected] with any questions. Please register using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07eiakqhufd01b987d ***Please do not register for…

Details

Date:
July 28
Time:
7:30 pm - 8:30 pm
View Event Website

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
View Organizer Website

Community Call: Cerebral ALD

Please join us for a Cerebral ALD Community Call facilitated by Jesse Torrey on Tuesday, August 3rd, 2021 at 3:30 PM Eastern Time (UTC-4 time) for pre-, post-, and non-transplanted families. Please reach out to [email protected] if you have any questions. Please register using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07eiakqi2ue82148c9 ***Please do not register for this call unless…

Details

Date:
August 3
Time:
3:30 pm - 4:30 pm
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Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
View Organizer Website

Community Call: AMN Men

Please join us for a community call facilitated by Ken Dieffenbach and Justin D’Agostino on Tuesday, August 3rd at 7 PM EDT for AMN men. Please reach out to [email protected] if you have any questions. Please use the following link to register: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07eiakpozefab20d66 ***Please do not register for this call unless you are a patient…

Details

Date:
August 3
Time:
7:00 pm - 8:00 pm
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Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
View Organizer Website

Bootcamp: Women with ALD

Symptomatic Women with ALD Bootcamp August 7, 2021 *schedule subject to change* 11:00 AM EDT WEBINAR Overview of Symptoms in Women with ALD https://zoom.us/j/94244177257 12:00 PM EDT WEBINAR Symptom Management https://zoom.us/j/91253811812 1:00 PM EDT WEBINAR Coping with an ALD Diagnosis https://zoom.us/j/93294733159 2:00 PM EDT WEBINAR Looking Ahead: Future studies https://zoom.us/j/95731328477 3:00 PM EDT OPEN DISCUSSION…

Details

Date:
August 7
Time:
11:00 am - 4:00 pm

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
View Organizer Website

August Workgroup 4 Meeting

Q: Are you ready to make a difference and help the ALD Community with outreach and education projects? Do you have ideas for resources that are missing or could be improved upon for patients and families with ALD? Are you curious how you might be able to advance a cure for ALD? A: JOIN US…

Details

Date:
August 19
Time:
7:00 pm - 8:00 pm

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
View Organizer Website

llamada comunitaria en español

¡Únase a nosotros para una llamada comunitaria de ALD Connect en español! La llamada se llevará a cabo el 28 de agosto a las 5 pm EDT (hora UTC-4) y será facilitada por Jean Cappello. Regístrese usando este enlace: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07eialwig1504f8620 **No se registre para esta llamada a menos que sea un paciente o un cuidador.…

Details

Date:
August 28
Time:
5:00 pm - 6:00 pm
View Event Website

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
View Organizer Website

2021 Outrun ALD Virtual 5K

X out ALD will host the 2nd annual Outrun ALD 5k on September 18th, 2021.  The 2021 Outrun ALD 5K will be virtual event once again this year. Outrun ALD raises funds for ALD research at the University of Minnesota's Leukodystrophy Center. Email [email protected] with questions. Follow X out ALD on Facebook and Instagram or visit our…

Details

Date:
September 18

Organizer

X out ALD
Email:
xoutald@gmail.com
View Organizer Website

Knockout ALD: Run for ALD, Cure the Boys (5K/1 mile)

Knockout ALD organizes and hosts the Run for ALD, Cure the Boys 5K and a one-mile-walk event in Maryland Heights, Missouri, to raise money for the ALD Research Fund at the University of Minnesota. This year's event will be in person and virtual, on November 20, 2021. Email Julie at [email protected] with questions.

Details

Date:
November 20
Time:
9:00 am - 12:00 pm
View Event Website

Organizer

Knockout ALD
Email:
RunforALD@yahoo.com
View Organizer Website

If you would like to add an event to the ALD Community Calendar, please email your event details [email protected] Please include the name of the event, description, and contact information. Thank you!